Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

Singing Is More Than Just The Music

Music has been a part of my life for over forty-five years.  I have enjoyed it in many forms from playing (guitar and piano), writing, disc jockeying (both on radio and at live events) and simply listening to it.  But above all, I love singing.

I started with the church youth choir at seven years old.  I would sing with other troupes, eventually participating in school choruses and chorales.  I performed in my share of school musicals.  Competitively, I would audition for the various levels of school festivals and eventually even find my way to the Allentown Symphony Chorus for a brief stint.

It did not matter when or how, as long as I enjoyed doing it, I was going to keep singing.

Music has played some very important roles in my life.  Besides my younger formative years, I relied on music to take my mind elsewhere as I sat in a chemotherapy chair for three hours during each treatment, the music inspiring my mind to help fight my Hodgkin’s Lymphoma.

Of course, music would also be blasted through my headphones, every time that I had to rehabilitate my body back from the many challenges it has faced.

And depending on the source of stress, I would pick a genre of music (I listen to everything), to help me meditate and reduce the toxicity that stress causes.

I should also mention, that my daughters also being involved in “musical” activities such as dance or orchestra, also produced enjoyment for me.

But over time, my survivorship has taken its toll on my body.  Damage from late developing side effects from radiation therapy and chemotherapy have wreaked havoc under the shell that people see.  Mobility and flexibility has been greatly limited, endurance mostly gone, fatigue a major problem, I simply do what I can, and I am happy with that.

Following my first heart surgery back in 2008, I needed to rehab my lungs, actually my entire rib cage area from being cracked open for the surgery.  Increasing and maintaining lung capacity is critical for recovery.  To help with this, I was given a “toy.”

This, is called a spirometer.  The goal is to get the “ball” to a certain higher number, repeatedly and eventually without effort.  And though it may seem easy, it can be frustrating, and boring.  But it was a requirement as I recovered from the surgery.  I would see this device several times after that, following two bouts with pneumonia, and other concerns with my lung capacity, courtesy of radiation damage to my lungs.

Like I said, using a spirometer is boring and difficult to keep up the interest.  But without this type of exercise, my lung capacity would continue to decrease, only more rapidly.

So, that is when I relied on something that had always been there for me in my life, music, in particular, singing.  There would be no better way for me to keep my lungs workable and pliable, than the level of breathing used to sing.

Unfortunately for me, my own worst critic, and having been professionally trained, there is something called technique, which my current lung capacity has taken away from me.  Musically, I still hit my notes, and for the most part, as clear and pleasant tone as I have always had.  But in my head, I notice my technique is gone.  Someone listening to me who has also been trained will likely notice it, those who are not, may not.

But singing has helped me keep my lung capacity as optimal as I can.  And given the crisis that we are currently in, Covid19, and the impact the virus can have on the lungs, with this pre-existing condition (one of many I have for Covid19), it is critical that I do what I can to keep my lungs in the best shape I can.  There are not may options for me if I get the virus and if impacts my lungs.

Keeping my lungs in shape recently has been difficult.  With various health regulations and advisements against public gatherings, opportunities to sing in public are between few and none.  Even karaoke, something I definitely enjoy, is not an option for me right now.  Sure, there is singing in the shower and in the car, but it is not the same.

I must keep singing though.  My lungs depend on it.  I must keep music in my life.  It is what gets me through.  Music is more to me than just the notes.  Music is life.


Handshakes And Hugs… Who Needs Them?

Disclaimer, I have never been much of a hugger, especially in the moments of a greeting or departure.  Although to be fair, when I saw the jpeg, I am thinking, okay, maybe I would make an exception for the pound-sized Hershey bar.

But seriously, growing up, there was never any of the kind of displays of salutations such as handshakes, hugs and kisses.  So, with the exception of my daughters and any particular special interest in my life, I actually feel quite awkward in displaying such greetings.

Howie Mandel has often been made fun of for the reasons he does not make physical contact with people, concern over germs, or the term “germaphobe.”  I have seen him react when his levels of comfort have been actually threatened, often for the sake of comedy.  For Mandel, it is quite serious.

For me, it is just awkward.  I have no interest in giving anyone a kiss that I am either not married to or dating.  As for hugs, meh, I could care less.  Again, for an immediate relation point of reference, I have no problem.  But if I am visiting someone’s home, or just happen to see someone I have not seen in a while, yeah, not so much into it.

The only salutation that I did not have any kind of issue with, was handshaking.  Yes, that is written in past tense.

Covid19 has taken care of that for sure with me.  Honestly, I am not heartbroken about it.  I actually think a smiling “Hi there!” from me, produces more of a friendly approach than a firm handshake might mistakingly infer.  I really do not care if I shake another hand at this point.

And this new thing… the elbow bump.  STOP IT!  It is just stupid.  Not to mention the fact, that if you are supposed to be socially distancing, you actually end up two feet closer (minimum) to be able to knock each other’s elbows.

We are now in our tenth month of this crisis, the seventh month full blown, and no end in sight.  I have mentioned in past posts, I get how many are having such a difficult time dealing with the recommendations and restrictions, and worse, the isolation.  Unless you have been blessed to not have lived through a health crisis, you know the urgentness of what we are facing with this crisis.

I try to keep the temperature low when it comes to discussions about Covid19.  Of course, I care about everyone, not just my family and friends, not just my fellow cancer survivors, but everyone.  I am a firm believer in science, and am quite frustrated that politics has caused the damage and confusion that it has.

Years ago, I worked with biohazards.  I was within small groups of co-workers.  The good thing was, all of those co-workers were on the same page, follow the rules and precautions.  An issue one day, led to management deciding that this small group was no longer a workable situation, and instead opened the assignment to the entire department, and I spoke up against it.  My arguments were denied, and given my health vulnerabilities, I did the only thing I could do.  It was one thing for the small and close group who respected the dangers of what we handled, but by requiring all employees, many of whom only cared about short-cuts to get done working early, my health was in danger.

I went to our health services department to obtain an exemption.  I was told that I “just had a problem with management.  There was no health concern.”  Again, if you follow my blog, you know I have a difficult health history.  I would eventually win my argument, but I should not have had to fight so hard.

THIS POST IS NOT ABOUT EFFICIENCY OF MASKS!  I have already written a post on that.  No matter what however, even the lowest level of protection of a mask does one simple thing, and I have said it long before Covid19.  It acts as a cough or sneeze guard for those who are either lazy or slob and do not cover their faces when they cough or sneeze.

Sure, when my kids were just entering daycare, that is when we learned a new method to prevent errant sneeze and cough germs, doing it into the crook of your elbow.  That way you just did not transfer your germs from you mouth or nose to your hands, and then not wash you hands.

Of course, Covid19 has made it more difficult, and more necessary.  And the sad thing is, it really does make a difference, in lowering the risk.  No, not the same as eliminating the risk.  I have said before, even with the N95 mask, unless you are trained how to wear one, it will do as well at protecting you as the surgical mask.  That is why I say it helps lower the risk.  And lowering is better than nothing.

I live in an area that is high into mask-refusal.  I have been mask shamed.  I have heard all the excuses why not to wear masks, and have yet to hear one that was valid.  Freedom not to wear them, sorry.  The only ones who lose their freedoms are the ones that die from Covid19.  Can’t breath or dying from breathing CO2?  Right, that is why the death rate of surgeons and operating room nurses is so high.

My favorite, no one tells me what to do.  You wear a seatbelt in your car, right?  And believe me, I am 100% against being forced to wear one.  And given the option or the ability to make up my own mind, I would not do it.  But the argument is there, seatbelts save lives.  And here is the part that I hear, and I say, “but it should be my choice.  If I don’t wear my seatbelt, it has no impact on my driving.”  Sound familiar?

When someone claims that wearing a mask does not save lives with Covid19, that just does not make any sense.  You may have the right, not freedom, to not wear a mask, but you do not have a right to make anyone else face a deadly virus.  Seriously, do you think you could get away with infecting someone with AIDS?  Don’t tell me that is different.  At least AIDS can be treated.

My decisions that I have made in regard to Covid19 have no impact on anyone.  I am protecting myself, and those around me.  I am not making a statement, political or otherwise.  Besides not wanting to contract Covid19, I do not want the responsibility of giving it to anyone.  If you think because you are young and healthy, you have nothing to fear, ask anyone who has met those descriptions and developed Covid19, and have struggled since, because they found out, they may not have been as healthy as thought.

I have been through these crisis before, and I have gotten through them because I have made smart choices, not tried to prove a point.  Covid19 will not be any different.

And for now, I don’t care if I shake another hand…ever.

Surviving Guilt

We know when we have done something wrong.  We also know if what we did that was wrong, was intentional or by accident.  Sometimes, something wrong may happen and we have no idea why.  But whether we recognize what we did, or whether it has been pointed out to us, under normal circumstances, we know what happened was wrong.  We feel bad.  Our conscience reminds us that we did something wrong.  And then hopefully, we can correct what has happened, apologize, and move on.

There are jokes and memes all around about different types of guilt from “Jewish mother” guilt, Catholic guilt.  There are more serious forms of guilt, such as those who commit crimes or other harm to people.  Guilt can be either healthy or unhealthy, depending on how you let it impact your life, especially if you cannot, or will not let it go.

This was a picture that I never thought I would see.  Estranged from my father, both of us having our reasons, one tragic night reunited us together, in a direction of healing.

My father carried a lot of guilt with him through his years.  I was just one source.  Obviously, there was my childhood, which he missed most of.  And then there was his absence during my battle with Hodgkin’s Lymphoma.

But an accident on a cold Winter’s night in December, just days before Christmas, left my father’s “cup” of guilt, overflowing.  He could handle no more, and sadly, more was going to come.

My father and stepmother had gotten into a heated argument.  Being just before the holiday, there was still some last minute shopping to do.  Having to put the argument aside, my father left the house to start the car and warm it up.  As my stepmother followed shortly after him, crossing the poorly dusk covered street, my father watched in horror as she was hit by a car, who had not had their headlights on yet.

Though my father’s attentions clearly were focused on the immediate medical needs of my stepmother, clearly my father could not stop thinking about what happened earlier that night.  He felt that had they not had that argument, at the least, he would have been crossing the street with her, and perhaps he could have seen the car, or at least taken the brunt of the impact.  He felt responsible for that evening.  He felt… guilt.  And because he could bare no more, he needed to release at least what he could.  The damage that my stepmother suffered, was permanent, and that guilt he would never be able to release.

The apple has not fallen far from the tree.  Like my father, I would accumulate guilt, some that I have been able to release, and some, like my father, I will likely carry to my grave.  And to the average person, this makes no sense.  “Just get over it.  It is no big deal.  It has nothing to do with today and now.”  If only it were that easy.

One of my first memories of something I remember doing wrong (not me in the picture), was throwing a snowball through a window.  Sure, not the smartest idea, but it was a light snow, not slushy and hard, definitely did not expect it to do damage, but it did.  And my friend got blamed for it I would later find out.  As soon as I found out, I admitted my fault.  There are a few of these stupid moments in my life as a child.  In these cases, while the actions were bad, the guilt was actually healthy, because it taught me accountability.

Then there is the unhealthy guilt.

My grandmother was my world, my moral compass.  She was my first immediate contact with the world of cancer having been diagnosed with breast cancer in 1986.  In 1998, she was diagnosed with her second cancer, ovarian.  As she was about to begin her chemotherapy, I stopped by the Saturday before just to visit her, as I often did.

Keep in mind, I had already faced my Hodgkin’s Lympoma nearly ten years earlier.  As soon as I walked into her house, I could tell something was not right.  On the dining room table was all of the literature, pertaining to things that she would need to know about going through chemotherapy.  None of it had been touched.  I wanted to think my grandmother was just neat about it, but there were no “folds” in the booklets to even provide evidence of being opened.

As I sat across from her in the living room, I noticed that she had cut her hair real short, buzz cut length, something I had never seen before.  Clearly a sign that she was preparing for what lay ahead side effect from her chemo.  But something still did not feel right.  She was withdrawn.  Barely a word was said during the hour visit.  Her thoughts were clearly elsewhere.

As I prepared to leave, I told her that I would visit her the next day.  Of course I was hoping she might seem a bit more “up” in spite of what she was facing.  I cannot explain what happened next or why.  Typically, when I left my grandmother’s house, I gave her a hug and kiss goodbye, and told her I loved her.  This Saturday, I did not.

That next morning, I was at church, when my grandmother called me.  She informed me that she was going to the hospital, that she was not feeling well.  When I told her I would leave right away, she told me to stay where I was.  I ran a youth group, and she knew I had an activity later that morning into the afternoon.  She told me that she would see me later that evening as originally planned.

Later that afternoon, during my youth event, another phone call had come to the church.  This time, and I honestly do not remember who it was that called, but the message was, my grandmother had died.  I was devastated.  Not just for the loss, but the fact that the last time that I saw her, was the only time, I did not tell her that I loved her.  I would never get that chance again.

Like my father, a guilt that I can never release.

As a rule, from that day, I have dealt with any issues, right at that moment, or as soon as possible.  The expression, “do not go to bed angry”, an important lesson both my father and I learned the hard way.  You may never have the chance to make amends.  Fortunately, there are not many things that I have done that have left me with any burdens of remorse.  And for the most part, if there are any, they involve my daughters and any absences that I may have as they have grown, a result of a divorce.

Especially this year, Covid has wreaked the most havoc in being able to spend time with my daughters, especially during the early weeks of the pandemic.  With no plans or structure in place how to deal with the outbreak, and me having a compromised immune system from my Hodgkin’s days, the most difficult of decisions had to be made, to cancel visits.  We live a distance apart, and safe travel arrangements needed to be arranged, and at that point, no one knew what to do.

But unlike my younger days, and like that of my father, I deal with my actions right away, giving the opportunity to heal and move on.  My daughters understand my health issues and struggles.  It does not make the losses any less painful, but it matters that they understand.

The toughest guilt of all to get through, not just for me, but for so many others, is survivor guilt.  Typically associated with those who have survived wars, natural disasters, tragedies and other accidents, survivors of cancer often develop guilt.  And the response from the “non-cancer” world is always the same… “you have nothing to feel guilty for, surviving cancer” or “how can you feel bad for surviving cancer?”

It is not that simple.  For instance, in my case, while Hodgkin’s Lymphoma has a fairly high cure rate, its treatments have cost me greatly with my health and late developing side effects from the chemotherapy and radiation therapy.  But again, here come the chants, “but you are still here!”  Again, it is not that simple.

These are just some of the wonderful people I have gotten to meet over my survivorship of over thirty years.  But they are all gone.  Some from the cancer, some from immediate side effects, some from late side effect issues.  They all had Hodgkin’s Lymphoma like me.  And there are literally hundreds of more photos I could post.  Why them?  Why not me?  What is so special about my body, that I am still here and they are not?

Yes, I know.  What I am really saying is, “it is not fair.”  Obviously cancer is not fair.  It does not matter how old, if you have family, if you are riding a huge wave of success.  The fact of the matter is, and I realize I do not possess the power to make the sun rise, or the waters to flow in the rivers.  But these friends of mine, deserve to still be here.  I am.  So should they.

That is survivor’s guilt.

I have spent almost as long in my survivorship, in therapy dealing with my survivorship guilt.  I have written articles and other special publications about the topic.  And still, here I am, literally and figuratively.  Still dealing with it.

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